Patient Story: My Battle with Cushing's Disease

Written on 21 June 2018.

My name is Teri. I am one-year post-op/in recovery from endoscopic trans-sphenoidal resection of pituitary adenoma, which is brain surgery to remove a benign tumor on my pituitary gland that causes Cushing’s Disease.

Cushing's disease is a serious condition. The patient has an excess of the steroid hormone cortisol in the blood, caused by a pituitary tumor that is secreting adrenocorticotropic hormone (ACTH). ACTH is a hormone produced by the normal pituitary gland. ACTH stimulates the adrenal glands (located on top of the kidneys) to produce cortisol, commonly referred to as “the stress hormone”.

I live in Alabama, and my long journey with Cushing’s began 11 years ago before I knew I had the disease. I was a 39-year-old woman, living life in the fast lane. I was a busy wife, a mother of 3 active teenagers, and worked full-time. I was generally healthy, except for a mild case of hypoglycemia, extremely low blood pressure, and seasonal allergies. I only weighed 130 and was constantly on the go with my kids, being involved in school, sports, and church activities. But one Saturday in 2005, it seemed everything changed for me. While out running errands, I began experiencing some tingling in the left side of my face and left arm. I became very tired. I brushed off the feelings as just being run down and tired from a busy week and a day of chores and errands that had been done. I went home and rested, but when I awoke, I had no feeling in the left side of my face or my left arm, and my left leg was heavy. My speech was slurred, and I was very confused. My husband knew immediately that something was wrong. I was taken to the emergency room to seek help and given blood thinners and told I was possibly having a stroke. I was admitted to the hospital for a series of tests. After the tests were completed, I was diagnosed with having Bell’s Palsy (a mild stroke affecting the face) and carpal tunnel syndrome (damage of nerves in the wrist.) Physical therapy was ordered for me to repair the damaged muscles in my face and strengthen my arm. I was also given steroids as treatment. I was in hopes that this was just a one-time thing, but little did I know, over the next few years, life as I knew it would be turned upside down.

After the first episode, life went back to normal, and I seemed to feel better neurologically, but I started gaining weight and began having digestive and severe stomach problems. In 2007, hospital admittance was required several times, and after several tests, I was diagnosed with Crohn’s disease. This was treated with more steroids, special medication, and a strict diet. I began feeling better after the treatments, but even on a strict, special diet, I was still gaining weight. I just could not understand. This matter made me very depressed. I discussed it with my gynecologist during an annual visit, and he explained that the steroid use could have caused me to gain the weight, and I would just have to work extra hard with the diet and exercise to get the extra weight off. He also ordered a series of tests on my hormones and thyroid. They all came back normal, so he prescribed something for depression to help me get over this depression state. I had never experienced depression before.

My next episode happened in 2008, a year later, when I developed kidney stones. The stones were very large and had to be surgically removed, and once again, I was given steroids for treatment. After recovering from that, I was scheduled to have a colonoscopy for a check on the condition of my intestines from the Crohn’s Disease. Much to the physician’s surprise, my intestines and stomach ulcers had healed. I was told I was no longer considered a Crohn’s patient, and perhaps I was misdiagnosed when I was given this diagnosis or the treatments healed me completely. I wasn’t sure why all of my symptoms went away and I no longer had stomach problems, but to me, this was great news. I thought finally all my hard work of trying to eat healthy had gotten some positive results.

In 2009, my year began with a severe case of strep throat, which, after treatment with antibiotics, turned into abscesses on my tonsils. The abscesses had to be lanced. After the treatment, my tonsils again formed an abscess and the procedure had to be repeated. This was a very painful process. I was given pain medication and more steroids for treatment.

In the spring of that year, I had another neurological episode with tingling in the left side of my face and my left arm, and I experienced confusion and slurred speech. I was admitted to the hospital, and after several tests were run, I was diagnosed with having a mild TIA, high blood pressure, high cholesterol, and was considered obese. I was prescribed high blood pressure and cholesterol medication. I had been under a lot of stress during this time when the recession occurred, and the building industry folded and the company I had been employed with for 20 years closed. Doctors told me that stress could have possibly been the cause of my latest episode. I was referred to a specialty Neurological Clinic for further testing. The physician that I saw was very concerned about my blood pressure that was still spiking after being on medication and the swelling in my face. He changed my blood pressure medication, and after reviewing my test results, diagnosed me with having a lacunar stroke. He said I should diet and exercise and take a Bayer 325 mg aspirin daily.

I followed his recommendations, but repeated the same process in the Fall 2010 with numbness in the left side of the face and arm. I went to the hospital for treatment and a series of tests. More CT scans, MRI, MRA, ultrasound of the arteries, heart tests, and lab work. All of the tests came back negative. After several days of observation, I was diagnosed with having another TIA. I was once again referred to the neurological specialist. The physician that I was a patient of the prior year, who had diagnosed me with having a lacunar stroke, had left the practice. The physician I was referred to was new to the practice and basically told me that all of my tests were negative, and I just needed to lose weight and quit babying myself if I truly wanted to get better. I had been through another life-changing event when my oldest son moved away to college, and I was told that possible added stress could have brought on my last episode, and I just had to learn to deal with life’s events if I wanted to stop having these neurological episodes.

This was very frustrating for me and my family. As I considered myself a very strong and determined person, after all I had been through, I would attempt to try and get up and go every day. Despite my illness, I worked full-time, took care of household chores daily, and attended every event possible that my children were in. My family would have to force me to rest in fear I would get sick again. I was so determined not to be sick, but I knew deep down inside something was very wrong.

As I seem to always feel tired and have spells of dizziness, I returned to my local neurologist in 2011, and he began to run more tests. I was tested for Lyme disease, Lupus, MS, Myasthenia Gravis, Parkinson’s disease, and many other tests. After all tests came back normal, I just accepted that my illness was undetermined at this point or maybe it was just all in my mind. Perhaps the one doctor was right, maybe I should not worry so much and just try harder. The harder I tried to be strong, the more run down I became. Several months after my round of negative neurological testing, I began to have more of the dizzy spells and fell often. I fell once and broke my ankle. It was placed in a cast. And another time, I fell and broke my wrist. Both times, I was given more steroids for treatment. None of these dizzy spells could be explained.

My next “attack,” as I had begun to call them, and new symptom came in 2012 when I was at work and my co-workers said I fell out of my chair and began having a seizure and stroke-like symptoms. I did not have any warning signs before this happened and felt fine before this episode. I was taken by ambulance to the hospital where I was admitted for several days and was told I had another TIA and multiple seizures. The seizures were unexplained, as it did not show any results on the EEG test. I was referred by my local neurologist to the Mayo Clinic for extensive testing. I spent a week being tested and tested neurologically. I left the Mayo Clinic with a diagnosis of complicated migraines. I did not understand this diagnosis, as I have never had a headache as a symptom. It was explained to me that I could have a complicated migraine and not ever feel the pain of a headache. I was prescribed migraine and seizures medications. At this point, I was willing to try anything. Being labeled a seizure patient caused more problems for me as a busy mom and wife. I was now unable to drive for months after having a seizure. This was a hardship on my family having to take me to and from work and other errands and not being able to be alone. Several more seizures came after that and a few that required hospital admittance for observation and from injuries received from falling while having a seizure. The seizures seemed to take a lot out of me and would require several weeks to recover. During one of my hospital admittances after a seizure, I was referred to a new neurologist specialist. This neurologist sent me for a sleep lab test, and it was determined that I had sleep apnea, and this was possibly causing the seizures. I began using a sleep machine and more seizure medication was added.

Despite the sleep machine and other medications, my seizures and unexplained stroke-like symptoms continued periodically for the next 4 years. During this time, I was referred to a stroke specialist in Louisiana to review my medical records. He confirmed that a few signs of older strokes were showing on several of my scans, but felt that I was having complicated migraines and had sleep apnea and all should be manageable with medication and lots of additional rest. He felt that when I got extremely tired that I could possibly have one of these episodes. He also advised me about my weight. I tried to explain that I honestly had tried everything to lose weight, but was just not successful. He stated that possibly the seizure medication and use of steroids could cause you to gain weight.

2016 was my worst year. It seemed that I stayed sick the entire year. In February, I had several seizures and was hospitalized, and it took several weeks for me to recover. In May of that year, I was hospitalized again with kidney stones. After my follow-up visit with my primary care doctor after my hospitalization, she was very concerned about my blood pressure and my weight. I seemed to have so much swelling in my face and stomach. I was referred to the gastroenterologist for testing. All tests ruled out anything gastro-related. She added additional blood pressure medication and put me on a very strict high protein diet. I was required to keep a food journal. I began losing weight rapidly; however, I began having more symptoms of confusion, dizziness, chest pains, and was falling a lot. One afternoon while leaving work, I was walking to my car and my left leg went numb, and I fell, injuring my leg and wrist. I went to my primary physician, and she was very concerned that my blood pressure was not under control and I was on 4 different medications. She added a fifth medication to control the blood pressure and asked me to monitor my pressure for several days. She was hoping that my blood pressure was elevated due to the pain I was in when I injured my leg. Extensive lab tests were ordered. I was scheduled to have an MRI on my leg in several days after the swelling went down.

After 3 days, my blood pressure did not go down, and I began having stroke-like symptoms, severe chest pains and mini-seizures. I was rushed to the hospital and was told I had a possible blood clot. A TKN was done, and I was admitted to ICU for several days. I was treated for a stroke, extremely low potassium, and diabetes. The potassium loss and diabetes were new symptoms to me. I was referred to a heart specialist. A TEE was done on me to check for a heart leakage and several other tests were done. All heart tests came back normal.

At this point, I was on 17 types of medication daily. 2 seizures medications, 5 high blood pressure medications, high cholesterol, potassium pill, 2 diabetic medications, hormonal medication, anxiety medication, blood thinners, vitamin D, prescription antacid, and fluid pills. My vison was changing daily, my hair was falling out, and I was having memory loss and frequent panic attacks, chest pains, and tremors. I had a lot of left-sided weakness from the recent stroke, difficulty walking, and trouble swallowing. I began physical therapy for these side effects, but I was so physically weak that I was unable to hold up. I took naps several times a day just to function. I was unable to return to work with these side effects, confusion, joint pain, and total exhaustion. I felt like I was just crumbling and falling apart. I was a complete mess, but my daughter was engaged to be married, and I set my goal high to be strong and prepare for the wedding. I had always been a take-control person and planned things, but I was physically unable to do all of the preparations for the wedding. All my friends and family rallied around me and helped me with the wedding festivities. My daily goal was to make it to the wedding. I honestly felt that this was the only thing keeping me going. It was a struggle, and I had a few setbacks, but I did make it to the wedding.

A few weeks after the wedding event, I stopped the high protein diet and began a regular low carb diabetic diet as recommended by my nutritionist. She felt I needed a more balanced diet. I immediately began gaining weight again and was still having extreme fatigue. I was then referred to an endocrinologist for my diabetes. At this point, I was so tired of being referred to different doctors and was hopeless as I went to visit the next one. The endocrinologist I was referred to was new to the area and had just opened-up a specialty clinic. I was one of her first patients. After she reviewed my case, she seemed very interested in helping me. She explained to me that she was determined to figure my case out. She seemed to take a special interest in me. She began running a series of tests immediately that lasted for several weeks, checking on me often. During this testing period, I had another stroke, and a few weeks later, another TIA. My blood pressure was not under control even with all of the medication. I was at my breaking point and was honestly ready to give up. I was so very weak, I could barely walk, my skin was very thin, I appeared so swollen all over, and the severe joint pain was unbearable. I was so concerned with all of the medication I was taking that did not appear to be helping. Lab tests were being done to keep a check on my liver levels. There were several days when I had to walk with a cane and some days when I had to be pushed in a wheelchair. I was convinced that I was dwindling away and was dying. I was preparing myself mentally and spiritually for this. These were some very bad days.

Then, it was finally a good day. I was in the hospital in November 2016. I had been admitted for another TIA when the endocrinologist doctor called and said she had found my problem. I had a tumor on my pituitary gland. She said she felt I had Cushing’s Disease, which is where a tumor has formed on the pituitary gland and causes overproduction of cortisol in the body. My family questioned if this was correct because while grasping at straws in the past when I was so ill, my husband had researched all of my symptoms, and Cushing’s Disease came up. I had every symptom; weight gain in the stomach area, moon face, buffalo hump on the back, high blood pressure, skinny legs and arms, bruise easily, diabetes, high cholesterol, facial hair, vision loss, and excessive tiredness. We talked to the primary doctor about this, but was told that my lab work would have showed that, and that had been ruled out.

The endocrinologist explained that she had done extensive lab tests, a saliva test, and a 24-hour urine test to determine this. The only thing she needed was to order a special MRI to confirm the tumor on the pituitary gland to confirm the diagnosis. The MRI test showed that I had a small tumor on my pituitary gland. She explained that the tumor could have possibly formed due to the use of too many steroids in the past, but was unsure. She also explained that this was probably the cause of all of my illnesses, and all of my symptoms should go away with treatment and removal of the tumor. I asked why I had gotten so sick and had so many new symptoms in the last few months, and she explained something in my system had put the tumor into overdrive, producing even more cortisol. I feel that perhaps it was the high protein diet I was on prior to her finding the tumor. Whatever it was, I was just thankful to have a correct diagnosis.

She immediately referred me to a neurosurgeon at a larger hospital as an urgent patient. Within 3 weeks, after more tests were done, I was scheduled for surgery to remove the tumor. Wow, I finally had an answer, but was very afraid. I was about to have brain surgery! But, I prepared myself for this, and I realized that I had prayed for answers and a cure, and I had received that, so I must trust that everything would be okay.

The surgery was performed in January 2017. I received an endoscopic trans-sphenoidal resection of my pituitary adenoma. When I was admitted to the hospital, the lab work indicated that my cortisol level was a 29. Normal level is a 9. The day after surgery, my lab work indicated that my level was a 7. This was a great sign that the surgery was a success and I was cured. I can’t describe how it felt to me and my family to hear those words “you are cured.” The doctor explained that she had cured me by removing the tumor, but I had to understand that the recovery process was a long and difficult road. Recovery time is not instant, and in most average cases, it takes about 9-12 long months. She told me you did not get sick overnight and you will not get well overnight. It was not as simple as “remove the tumor and get better”. She cautioned that it would just take time. In Cushing’s cases, the tumor had controlled the pituitary gland for so long that the gland was no longer working. It was in sleep mode, and it would take several months to wake up and function on its own. During this time, I was still cortisol-dependent and had to take the prescribed dosages for several months, and then wean off the medication slowly. This was a very trying time. As the recovery process began, my body had to go through a lot of emotional and physical changes. My hormone levels were up and down. I would have very sad days, dark depression days. And then very bright days. The joint pain was unbearable at times, and the fatigue problems got worse. Some days, it was a challenge just to take a shower and get dressed. Every time my steroid dosage would be adjusted, I would go into withdrawals; the nausea, vomiting, joint pain, and severe depressions that would last for days. But, over a course of 9-12 months, I slowly began to overcome all of this and became myself again. The weight gain and puffiness from the Cushing’s Disease went away, the fatigue and depression became less each day, my hair loss stopped and began re-growing, and my overall skin appearance looked better, and I felt better than I had in a long time. One by one, the medications were stopped as symptoms went away.

I underwent 7 months of intense physical therapy to rebuild my muscle strength from the damage the Cushing’s Disease had caused and from a few side effects of the stroke. Therapy was very difficult, but it was also very helpful in the recovery process.

At my last follow-up visit with my endocrinologist, she was amazed at my results and was pleased that lab work showed signs that my pituitary gland has begun to work again. She advised me that I had a few more step downs to be taken off all medications, but she was discharging me as a seizure patient, stroke patient and diabetic patient. I was no longer suffering from potassium loss, vitamin D deficiency, hypertension, and Cushing’s disease. She did, however, make me aware that I will need follow-up visits to have MRI and lab work done, because there is a 20% chance that the tumor could return, along with all of the symptoms. I realize that there is a chance that this terrible disease could come back, but I am staying positive and looking at the 80% chance that it will not.

This long journey with Cushing’s Disease has been by far the worst experience in my life, with all of the ups and downs that I have been through. The numerous symptoms and side effects that Cushing’s Disease caused were very tough on me. The seizures and strokes were the scariest. When you lose control of your body and don’t understand what is happening to you, it can be very frightening. The constant all-over joint pain – where I felt like I had been hit by a train - was a daily struggle. The potassium loss gave me severe chest pains and dizziness, along with the high blood pressure and a diabetic state. I always had what seemed like fog-headedness and confusion. The constant weight gain when I was dieting and exercising regularly was very frustrating. The fact that I just never felt well, had trouble walking, had memory loss, and was not able to do daily tasks was discouraging.

As I look back, I realize how overwhelming it was to go through all of the hospital stays and medical tests. It’s frustrating to consider all the doctors I have been referred to, all the medications I have tried, all the missed days from work, and finally the day that came when I had to realize I was no longer able to work. The financial cost and the emotional strain this has put on my family is all so overwhelming to me. Cushing’s Disease has put me through so much and has taken so much away. Most of my symptoms did go away, but I still have a few noticeable side effects from the stroke; I have memory loss, my attention span is shorter, and my left side is a lot weaker. However, I am thankful that these few side effects are so minor. I will also say that after having gone through all of this, as hard as it is to say, I am thankful I went through every one of those trying and difficult times. First, it has made my faith stronger. I have always been a believer, but this experience has helped me grow closer to the Lord. Daily I would pray and read scriptures. On difficult days, it would give me a peace and comfort, and most of all hope. It seemed everywhere I went someone had added me to their prayer list or told me they were praying for me. I would receive encouraging cards, texts, and phone calls that reassured me that the Lord was with me. This was amazing to me that people I did not even know were praying for me. It has made me a stronger person and more aware of what I can overcome. I certainly have more respect for people with disabilities and illnesses. I have realized that material things don’t mean as much as they used to before my illness and that perhaps I had my priorities out of order for a while. I guess you could say I got knocked down to my knees and things look differently now. I am not sure why I had to go through all of this, but I am glad I did. Now I do not get upset over small petty things, and I learned to step back and look at the bigger picture in situations. I have learned that you must stay positive and look for the good things. A wise friend once told me in all situations to “choose Joy,” so I must say that I have honestly tried to choose joy daily, and on dark days during the recovery process, this was not easy.

I remind myself that a year ago, I was on 17 medications and now I only take 3 and that I am being weaned from them, so that in itself is encouraging. Recently, my daughter took a current photo and compared it to a photo from last year before the surgery and the difference is amazing. I did not look like the same person in the picture. So that is a great visual reminder to me of the mountains I have climbed. I try to stay positive and look for better days ahead.

Also, along this journey, I found the values of true friendship and company and have met some great people in the medical field and other areas along the way. I have shared my story with several people, and to my knowledge, 2 people that had similar symptoms were tested for Cushing’s and tested positive. That was definitely a WOW moment. This is such a rare disease, but sometimes I look at diabetic people and others who have the symptoms I had and I wonder - could they possibly have Cushing’s Disease? I wish that this disease was better known. I wish people were made aware of about excessive use of steroids for treatment. I certainly will strive to make more people aware. For anyone who is willing to listen to my story, I will be glad to share. I proudly show my pictures of then and now and my medication list of then and now as a testimony.

I want to thank the endocrinologist who was determined to help me and the neurosurgeon who cured me, but also, I would like to thank my other doctors and medical staff that tested and treated me for the symptoms that I had to the best of their ability. Lastly, and most importantly, I would like to thank my entire family for all their love, support, and encouragement daily. They have always been there for me with no questions asked, and a special BIG thank you to my wonderful husband, he without a shadow of a doubt has honored his vows in sickness and in health. He has been there every step of the way with me, and I will say there were some very bad days along the way, but I know I could not have fought this battle without him by my side. He is truly my best friend and number one supporter, and I love him dearly. I am the one that had Cushing’s Disease, but it has truly affected all of us.

It’s the beginning of 2018. I am almost fully recovered, about 90%. I am not sure what to do with my life now. I have not been well in so long, it’s unfamiliar. I can now drive myself and be left alone. It’s like I have my freedom back. Perhaps I will return to work or maybe do some volunteer work. But one thing I do know is that I have been cured and given a second chance at life. I thank the Lord for it daily, and I choose to enjoy it by spending more time with family and friends and helping others. Who knows what tomorrow holds?

I would like to say to anyone who is battling any kind of illness: cling to hope, faith and love, and always stay positive that a cure or diagnosis may be right around the corner.

This is the bible verse that I read daily for strength:

– Psalm 103:1-5 ~ “Praise the Lord, my soul; all my inmost being, praise his holy name. Praise the Lord my soul, and forget not all his benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagles.”

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